TYSON MATTHEW KOTTELENBERG


"The Lord is faithful to all His promises, and loving toward all He has made." Psalm 145: 13b

This blog is about our nine year old son Tyson. Tyson was born with serious complex congenital heart defects, (Hypoplastic Right Ventricle, Tricuspid Atresia, Coarctation of Aorta, Transposed Great Arteries, with VSD and ASD.)
In short, the right side of his heart is completely under-developed (he has half a heart,) his main arteries are mixed up, and his aorta is narrow. He has undergone 3 open-heart surgeries and 5 heart cath procedures to try to 'repair' his heart. Sadly, Tyson has also been diagnosed with pulmonary vein stenosis, a fatal disease in the veins of his left lung. Typically, having the 3 palliative surgeries buys children with single ventricle hearts many years before eventually needing a transplant. But because of the narrow pulmonary veins, this increase in pressure is causing his blood to shunt the opposite way across his Fontan fenestration and surgeons are not able to close the fenestration. As a result, he remains on coumadin and is heading down the transplant road faster than we'd originally anticipated. He's still doing AMAZINGLY well all things considered. We entrust our dear son into the hands of God, knowing that in all things God works for the good of those who love Him!

Day Two Post-Norwood - Saturday, December 6, 2008

"And we know that in all things God works for the good of those who love Him, who have been called according to His purpose."
Romans 8:28





The plan for Sunday is for Brian and I to visit Toronto church for the morning service but most likely won't hit the afternoon service because we don't want to leave Tyson for too long. Even though there isn't much we can do for him yet, we don't want to be so far away all day in case there is a change in his condition (good or bad).

Right now Tyson is soooooo low in immunity and if he were to catch a cold at this time, it would set his progress back quite a bit. The least amount of people who go in and breathe on him and fuss over him, the quicker he will recover. Please understand why we don't want too many people touching him and fussing over him. We want him to recuperate as quickly as he can so that we can hold him again, nurse him again, and GO HOME with him again!


This morning I heard a baby crying as I was walking down the hall and I burst into tears because I just want to hear my son cry again! Sounds funny but I really want to hear him cry again, then I know he is stronger and on the road to good recovery. The nurse last night said that he is making a "textbook recovery", nothing miraculous but nothing terribly alarming. So that is good news. We just have to be patient. He has some fluid behind his lungs from laying on his back a lot, but that is very common. The doctors are keeping a close eye on it and if it is still there by tomorrow they will insert another tube to drain the fluid. He will have an ultrasound in the morning to see how things are looking.
This afternoon my parents came to visit with Braden, Merrick and Kenya. We had a nice time. I got a chance to look over the boys school work from this past week, and Kenya showed me some of the colouring she has been doing at Grandma's house. Even though the kids were not able to go in and see Tyson we managed to keep them busy playing in Marnie's Lounge where there are air hockey tables and table hockey, among other things. Then we enjoyed some fresh air and walked over to the Eaton's Centre which is a few blocks away. The kids enjoyed gazing at the huge Christmas tree and lights that they have on display there.

That's all for now,

Brian, Mel and Tyson

10 comments:

Jay & Lin said...

Thanks for the updates. Hang in there. In our thoughts and prayers, Jay & Linda, etc.

Anonymous said...

Hi Brian and Mel,

You are in our thoughts and prayers with your little Tyson. We are so glad to hear that all is going well with the recovery of his surgery.

Jack and Jenn Thalen

Melanie said...

That tree is beautiful! We went to the Shelburne parade tonight and it was full of lights too! We were gunna take your kiddies, but I am sure they had a much better time visiting Daddy and Mommy!! Hang in there seesta!!

Anonymous said...

Hey there Brian and Mel,
We too are so thankful of God's grace and mercy! We pray for you all often. Seeing those pics of Tyson bring back some memories of our girls in the NICU...a different situation, but tubes and PICC lines and IVs in the head are still hard for me to look at...It is hard not to be able to hold and nurse and cuddle your little guy, and wanting to hear his cry, we wanted the same thing. We had to remind ourselves of that a few months later when Megan would cry at home :)
Melissa, make sure you keep drinking and eating so that you can keep pumping...get your rest too!
Keep your Bible close, pray often and write journals.That is what will get you through those hard days. We will keep you all in our prayers.
Henry and Julia Meerveld

Jeff and Karen said...

Hi Guys
We're glad you had a good day with the kids today!
Squeeze Tyson's hand for me!
k

Anonymous said...

That was very emotional to read, stay strong, and we hope and pray that Tyson makes a speedy recovery.
All the best.
Bonnie B

Anonymous said...

Speaking of technology, isn't it great to be able to keep everyone updated and stay connected to your support network! You are in our prayers, may you receive the patience and strength for this emotional roller coaster you will be riding for the next while. Hang in there!
Sheryl

Anonymous said...

Thanks to facebook, us in Smithville finally heard the news. Sorry we have been so slow to write, but we pray that God will be with you in the days to come, and we thank Him that he has been with you and your little boy in the past week or so! All the best, we will be thinking of you,
Tim and Virginia and little Owen.

Anonymous said...

Our prayers are with you guys in this hard time. I couldn't even imagine what you must be feeling, but Rick, Clark, and I are sending you virtual hugs and kisses.....xoxoxoxoxoxoxox.

God Bless you and the Family

Love Rick and Tamara and Clark

Anonymous said...

Hi Brian and Mel. We just looked at your blog with Marnix and Anne Marie and their oldest 3. Also our prayers are with you and we are thankful that we can keep "in touch" with you. We pray for continued strength for you both, and for you Dad and Mom, who have a big job too. Love you, Uncle Peter and Aunt Henrietta.